IDEAS home Printed from https://ideas.repec.org/a/gam/jijerp/v18y2021i6p2956-d516538.html
   My bibliography  Save this article

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Author

Listed:
  • Carmen K.M. Ng

    (Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong 999077, China)

  • Dara K.Y. Leung

    (Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong 999077, China)

  • Xinxin Cai

    (Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong 999077, China)

  • Gloria H.Y. Wong

    (Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong 999077, China
    Sau Po Centre on Ageing, The University of Hong Kong, Hong Kong 999077, China)

Abstract

Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty. We interviewed 110 carers accessing a community-based dementia assessment service for suspected dementia of a family member for their perceived difficulty, delays, and barriers in help-seeking, and carers burden in terms of role strain, self-criticism, and negative emotions. Linear regression models showed that perceived help-seeking difficulty is associated with carer self-criticism, while carer role strain and negative emotions are associated with symptom severity of the person with dementia but not help-seeking difficulty. Inadequate knowledge about symptoms, service accessibility, and affordability together explained more than half of the variance in perceived help-seeking difficulty (Nagelkerke R 2 = 0.56). Public awareness about symptoms, support in navigating service, and financial support may reduce perceived difficulty in help-seeking, which in turn may reduce carer self-criticism during the early course of illness.

Suggested Citation

  • Carmen K.M. Ng & Dara K.Y. Leung & Xinxin Cai & Gloria H.Y. Wong, 2021. "Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia," IJERPH, MDPI, vol. 18(6), pages 1-11, March.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:6:p:2956-:d:516538
    as

    Download full text from publisher

    File URL: https://www.mdpi.com/1660-4601/18/6/2956/pdf
    Download Restriction: no
    File URL: https://www.mdpi.com/1660-4601/18/6/2956/
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. Martin Pinquart & Silvia Sörensen, 2007. "Correlates of Physical Health of Informal Caregivers: A Meta-Analysis," The Journals of Gerontology: Series B, The Gerontological Society of America, vol. 62(2), pages 126-137.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Anna Messina & Rebecca Amati & Emiliano Albanese & Maddalena Fiordelli, 2022. "Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point," IJERPH, MDPI, vol. 19(12), pages 1-18, June.
    2. Hajime Takechi & Naoko Hara & Kyoko Eguchi & Shoko Inomata & Yuki Okura & Miwa Shibuya & Hiroshi Yoshino & Noriyuki Ogawa & Morio Suzuki, 2023. "Dynamics of Interaction among Professionals, Informal Supporters, and Family Caregivers of People with Dementia along the Dementia Care Pathway: A Nationwide Survey in Japan," IJERPH, MDPI, vol. 20(6), pages 1-13, March.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Cinzia Di Novi & Rowena Jacobs & Matteo Migheli, 2013. "The quality of life of female informal caregivers: from Scandinavia to the Mediterranean Sea," Working Papers 084cherp, Centre for Health Economics, University of York.
    2. Thin Nyein Nyein Aung & Myo Nyein Aung & Saiyud Moolphate & Yuka Koyanagi & Siripen Supakankunti & Motoyuki Yuasa, 2021. "Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand," IJERPH, MDPI, vol. 18(11), pages 1-15, May.
    3. Borja Rivero Jiménez & David Conde-Caballero & Lorenzo Mariano Juárez, 2022. "Technological Utopias: Loneliness and Rural Contexts in Western Iberia," Social Sciences, MDPI, vol. 11(5), pages 1-15, April.
    4. Eve Wittenberg & Adrianna Saada & Lisa Prosser, 2013. "How Illness Affects Family Members: A Qualitative Interview Survey," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 6(4), pages 257-268, December.
    5. Laia Calvó-Perxas & Joan Vilalta-Franch & Howard Litwin & Oriol Turró-Garriga & Pedro Mira & Josep Garre-Olmo, 2018. "What seems to matter in public policy and the health of informal caregivers? A cross-sectional study in 12 European countries," PLOS ONE, Public Library of Science, vol. 13(3), pages 1-12, March.
    6. Lara Lopez & Fernando L. Vázquez & Ángela J. Torres & Patricia Otero & Vanessa Blanco & Olga Díaz & Mario Páramo, 2020. "Long-Term Effects of a Cognitive Behavioral Conference Call Intervention on Depression in Non-Professional Caregivers," IJERPH, MDPI, vol. 17(22), pages 1-24, November.
    7. Marie Blaise & Laetitia Dillenseger, 2023. "Informal Caregivers and Life Satisfaction: Empirical Evidence from the Netherlands," Journal of Happiness Studies, Springer, vol. 24(6), pages 1883-1930, August.
    8. Young Kyung Do & Edward C. Norton & Sally C. Stearns & Courtney Harold Van Houtven, 2015. "Informal Care and Caregiver's Health," Health Economics, John Wiley & Sons, Ltd., vol. 24(2), pages 224-237, February.
    9. Furkan Tosyali & Ezgi Coban-Tosyali & Mehmet Harma, 2024. "Predictors of Subjective Health Among Spouses and Its Relations With Happiness: A Multilevel Analysis in a Nationwide Survey in Turkey," Journal of Happiness Studies, Springer, vol. 25(6), pages 1-20, August.
    10. Miller, Ray & Sedai, Ashish Kumar, 2022. "Opportunity costs of unpaid caregiving: Evidence from panel time diaries," The Journal of the Economics of Ageing, Elsevier, vol. 22(C).
    11. Ignacio Gimeno & Sonia Val & María Jesús Cardoso Moreno, 2021. "Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia," IJERPH, MDPI, vol. 18(3), pages 1-16, January.
    12. Costa-Font, Joan & Vilaplana-Prieto, Cristina, 2023. "Caregiving subsidies and spousal early retirement intentions," Journal of Pension Economics and Finance, Cambridge University Press, vol. 22(4), pages 550-589, October.
    13. Afeez Abiola Hazzan & Pamela Beach & Lauren J. Lieberman & Cassidy Regan, 2023. "Home-Based Pilot Intervention to Improve Quality of Life and Related Outcomes among Unpaid Caregivers and Their Care-Recipients with Visual Impairments," IJERPH, MDPI, vol. 20(5), pages 1-12, February.
    14. Christina E. Miyawaki & Erin D. Bouldin & Christopher A. Taylor & Lisa C. McGuire, 2021. "Baby Boomers Who Provide Informal Care for People Living with Dementia in the Community," IJERPH, MDPI, vol. 18(18), pages 1-10, September.
    15. Seth Christopher Yaw Appiah & Inge Kroidl & Michael Hoelscher & Olena Ivanova & Jonathan Mensah Dapaah, 2019. "A Phenomenological Account of HIV Disclosure Experiences of Children and Adolescents from Northern and Southern Ghana," IJERPH, MDPI, vol. 16(4), pages 1-19, February.
    16. Wang, Wei-Pang & Wu, Li-Hsueh & Zhang, Wei & Tsay, Ruey-Ming, 2019. "Culturally-specific productive engagement and self-rated health among Taiwanese older adults," Social Science & Medicine, Elsevier, vol. 229(C), pages 79-86.
    17. László Árpád Kostyál & Zsuzsa Széman & Virág Erzsébet Almási & Paolo Fabbietti & Sabrina Quattrini & Marco Socci & Cristina Gagliardi, 2022. "The Impact of COVID-19 on the Health and Experience of the Carers of Older Family Members Living with Dementia: An Italian–Hungarian Comparative Study," IJERPH, MDPI, vol. 19(9), pages 1-29, April.
    18. Marie Blaise & Laetitia Dillenseger, 2020. "Informal caregivers and life satisfaction: Empirical Evidence from the Netherlands," Working Papers of BETA 2020-55, Bureau d'Economie Théorique et Appliquée, UDS, Strasbourg.
    19. O'Reilly, Dermot & Connolly, Sheelah & Rosato, Michael & Patterson, Chris, 2008. "Is caring associated with an increased risk of mortality? A longitudinal study," Social Science & Medicine, Elsevier, vol. 67(8), pages 1282-1290, October.
    20. Min Ji Song & Ji Hyun Kim, 2021. "Family Caregivers of People with Dementia Have Poor Sleep Quality: A Nationwide Population-Based Study," IJERPH, MDPI, vol. 18(24), pages 1-12, December.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:gam:jijerp:v:18:y:2021:i:6:p:2956-:d:516538. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: MDPI Indexing Manager (email available below). General contact details of provider: https://www.mdpi.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.